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[Deslie]

Hi! My 13 year old son had his 1st tonic clonic seizure on Dec 26, 2009, it was truly the scariest thing I've ever experienced. We have no family history on either mine or my husbands side of the family, there was no head injury or illness, he is a very healthy kid, he wrestles and plays football. He had an EEG that showed generalized seizure activity. Neurologist put him on levetiracetam 500mg 2x per day. Second seizure was Feb 24, 2010 after a wrestling tournament. It was his worst fear....a seizure in front of his friends. At that time came his "official" epilepsy diagnosis. His meds were changed to name brand Keppra XR 750mg 2x per day. This is where I get real nervous. The doc had given us a RX discount card since we were switching to name brand, the pharmacy said it couldn't be used because the drug company doesn't recommend kids under 16 years old using XR formula. I called the doc to make sure the XR was correct and told yes that's what he wanted. I'm still uneasy about the XR and 2x per day dosage, but so far so good. I've ready tons of posts and haven't seen anything relating to the Keppra XR so I thought is was time I came from the lurking world to ask the questions. Has anyone had any experience with the XR or heard of it being given twice per day? I have 100% confidence in the neurologist, but don't want to overmedicate. Thanks!
:e:

 

[epileric]

Welcome Deslie

I've been on Tegretol XR (CR here in Canada) for as long as I can remember. I've always taken it twice a day. I think doing it that way is much better than taking a larger dose once a day, even if it is XR.

Meanwhile stick around, there's a few people that have been on Tegretol CR here.

 

[Nakamova]

Hi Deslie, welcome to CWE.

When it comes to meds, you can't ask too many questions. Don't be shy about pestering your neurologist until you feel confident in his explanation. Everyone reacts to meds differently, so even if Keppra XR 2x/day is standard operating procedure, it's still a good idea to pay close attention to how your son is feeling and functioning on it. If you've been reading about Keppra here, then you probably know about the possibility of "Kepprage". If the moodiness strikes, consider adding a B Vitamin supplement (with B6) to your son's diet. And if any of his side effects become intolerable, then don't hesitate to contact your doctor about trying something else.

It's worth trying to find the trigger(s) for your son's seizures. Since he's athletic it's possible that dehydration or low blood sugar may have played a role. I know wrestlers often have to diet to make their weight class; if that's the case for your son, then he should take care to make sure he's getting proper nutrition and rest (never easy for a teenager...).

Best,
Nakamova

 

[Cint]

Welcome Deslie,

Sorry to hear of your son's seizures. I take Keppra- 3000 mg./day, although it isn't the XR and I have CP and TC seizures.

Here is some info on the medication(s) from epilepsy.com:

What are the effects of Keppra XR on children?: Basic

Safety and effectiveness of Keppra XR in persons below the age of 16 have not been established.

In children, regular Keppra has been used primarily to treat partial seizures, ones that begin in a limited area of the brain.

Wiht regard to regular Keppra, doctors figure out how much medicine to give to young children based mostly on their weight. To keep side effects at a minimum, the doctor probably will prescribe a low dose to start with and increase it slowly. Children usually start with a dose of 10 milligrams (mg) for each kilogram (kg, about 2.2 pounds) of their body weight per day. This would be 250 mg per day for a 55-pound child, for instance. Half this amount is usually given two times a day. After a gradual increase, most children do best taking about 20 to 40 mg per kg per day, Adjusted for weight, this is a little higher than the adult dose because children's bodies eliminate regular Keppra more quickly.

 

[Deslie]

Thank you for the information on Keppra. I will be talking to his neurologist and asking more questions at his next visit in May.
We unforutnately don't know what the triggers are. After the first seizure we thought possibly lack of sleep. It was the day after Christmas, we had been going non stop since Christmas Eve with very little sleep, the seizure happened at 8:30am right after he woke up. The second seizure happened at 8:30pm, he had been at the wrestling tournament since 1:00pm that day, he only wrestled 3 times, each a very quick match, he had eaten around 6:00pm so he hadn't been hungry or tired. The second seizure he remembers more up to and right after, after the first seizure he didn't remember a week or so before and it took a couple of days for the memory to come back. The ER doc had said if he had a migraine induced seizure that the extensive amnesia is normal. But I guess we will never really know because he doesn't remember having a migraine before. We have tried very hard to link common factors in the 2 seizures to try and understand the triggers, but really no luck yet.
Thanks again!